posted
Our daughter is in her mid-20's. We now realize she has had Lyme and Ehrlichiosis for years, with odd symptoms but a ``normal'' life.
She became acute last October, but we were slow on the uptake because we thought it was only a back injury. We finally caught on in Jan / Feb and started looking around for help.
Her Igenex labs came back positive, to put it mildly. She was already on a long list of supplements by then, and we obtained Doxy for her in March. She's been on it 6 weeks now, and she has enough to last til her first LLMD visit in another month.
Meanwhile, she kept getting worse. She has tremendous pain, fatigue, very stiff neck. I just looked, and in the ILADS guidelines for Lyme disease she has 23 of the 25 symptoms listed, plus weight loss, excessive thirst, and a strange rash.
She left her house, boyfriend, and job to come home so we could nurse her. This is a girl who always used to be energetic, vibrant, headstrong, athletic, adventurous.
Now she rests on foam pads for much of the day, and I keep thinking about the likelihood of permanent damage from out-of-control inflammation.
I know I can't help her when I'm so down, but really....I'm so down.
Judith (Richard's wife)
Posts: 228 | From Mass. | Registered: Feb 2009
| IP: Logged |
posted
There is always hope. Read Burrascano's lyme treatment guidelines on the ILADS site. Also you may want to post in seeking a doctor with the doctors initial to see what people say about the LLMD you are going to see.
Posts: 743 | From New York | Registered: Apr 2009
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
There is no better doctor than a mother who cares.... and I can tell simply by the fact you are here asking for help that she is in good hands.
With Doxy and other antibiotics she will get worse before she gets better. Sometimes MUCH worse. That is difficult for a parent to watch. You are reacting normally to that process.
My bet is you feel helpless and worried.... to say the least.
May I suggest?
Worry never fixed anything, so do try to remember that. And...
You are doing all you can to help... so feel good about that.
You said..
"She left her house, boyfriend, and job to come home so we could nurse her. This is a girl who always used to be energetic, vibrant, headstrong, athletic, adventurous."
Do not be surprised if she gets angry a lot and depressed too. She may be hard to live with at times for those reasons but she doesn't not mean to be cranky.... not at all.
We are not all the same... but once I was treated with long term doxy... and had folks who cared that helped me through the worst times.... I was finally able to go back to work and have a life again.
Hang in there mom.
You are doing the right thing and she is a VERY lucky girl to have you there helping her.
posted
Wow, Tincup you weren't even addressing me and I'm uplifted!
Posts: 743 | From New York | Registered: Apr 2009
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
it takes alot of time to gain ground from LD and co-infections but it does happen. Time is on her side because of her youth. Yonger people tend to bounce back faster. Hope she has a good lyme literate doctor.
There is hope just hand in there and you are not along
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
posted
oh thank you all. Tincup, you've got me in a puddle of tears on the floor, which is a good thing. I feel so much better, just really sad. Only on this board would that make sense!
I think I spent the first months holding grief at bay by diving into education, medicine, and alternative approaches. But the feelings all have to come out sometime, and I've been very leaky lately.
Yes, she does get irritable sometimes. But even that makes me sad, because in all her former glory she would have been outraged and furious when things went wrong, but now she no longer has enough energy for such strong emotions.
Will do the reading John S, reading always helps to stabilize me.
Thanks 5dana8. I kept thinking all these losses are too hard because of her youth. She wants to be having a life, not lying around in a fog in her parents house.
I totally forgot that her youth and previous level of fitness are also in her favor. Maybe when she is better and we look back, this time period will not seem as long as it does now.
Judith
Posts: 228 | From Mass. | Registered: Feb 2009
| IP: Logged |
9 months ago my vertigo was so severe i could not walk very well....on Sunday i ran 2 miles. My only advice would be to know who you are talking too when helping your daughter. Sometimes the disease does our talking and thinking. It robs us of our souls if you allow it...having good support can change that however.
Always bring your daughther back to center and remember to fight like hell. I never allowed myself to fall into the abyss because of the support around me. Be as positive as you can even if it mean lieing:)..there will some days where you will have to do that.
Deal in facts and that wil help also...here are the only true facts i know about this disease:
a) people beat it b) it takes a long time
the sooner you and your daughter accept that the sooner you can start working on a strategy. that strategy in my opinion (and some DR) includes any kind sweating you can get in, any kind of exercise you can do, pristine diet, lots of prayer and staying positive and remebering to laugh.
Good luck..we're here if you need us.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
| IP: Logged |
I have a 22 year old daughter...with..Lyme...Erlich...co-infections....
I know how hard it is to watch your daughter suffer..
Your daughter will get better with the right meds and the right LLMD she will pull through this....
She does need her mom ...so anytime you get sad...mad... ``leaky'' come on to the board...express your feelings.....many times this board helped me through some dark days....
you need support and encouragment!! that's what LymeNet is all about...
hoping for better days ahead!!! mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Judith, Richard and Daughter >>>>>.
I know it can be very discouraging, But don't give up! This board is a huge help, full of info' and many encouraging folk!!!
If her pain and ears,and yours as well can tolerate sound, sometimes soothing gentle music can help!!!
I keep it soft and gentle,because of tinnitus and other issues... but sometimes it can lift our moods!!!
You'll be in my tho'ts and prayers!!!
Silverwolfy
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
bettyg
Unregistered
posted
welcome judith here! you've found the right place to get support for you, hubby, and your beloved daughter.
tincup as always did a supurb job of speaking from her heart.
yes, you and richard are good parents for allowing her to come home and given UNCONDITIONAL love. in the lyme and co-infection world, that is a RARITY as most of our families reject us and give NO SUPPORT or understanding whatsoever!
yes, we all will get worse and hit bottom before we get better on the road to lyme remission.
success stories ... go to top of SUPPORT and read all of them posted ok. that will give you hope and better understanding.
top of SUPPORT; go thru my LYME VIDEO COLLECTION. please look for the one on iowa's alex, 15, and then you will thank your lucky stars your daughter is NOT in that shape and she is so much better. it's a wake-up to reality for most folks.
i have always found by finding others worse than me; i count my blessing to have what i have and learn to adapt accordingly while giving god my blessings for what i STILL can do. my best to you all.
IP: Logged |
The only words of advice I might add are....don't forget to take some time out from caring for your daughter to take care of yourselves. Taking care of and nursing someone back to health can become very overwhelming both emotionally and physically. Only through taking care of yourselves can you offer the best care possible to your daughter! Besides, I''m sure your loving daughter would not have it any other way!!
-------------------- My comments on this site are not intended to be taken as medical advice as I'm not a physician. Posts: 206 | From Georgia | Registered: Dec 2008
| IP: Logged |
bettyg
Unregistered
posted
judith, here's some more ... the maximum i can give you or anyone!!
yes, we practice the GOLDEN RULE here; in time you will after you've overcome your many hurdles of life right now.
yes, take time for YOURSELVES and get respite care for your daughter or you will become the victims 1st and your daugter will linger without you being here. take care and god bless you all...
IP: Logged |
posted
oooo, HAPPY, 8 sweet kisses!!! You made my week!
I am back on my feet now, feeling so much better, and ready to go on again.
So much good advice here, I am still slowly soaking it in and taking it to heart.
blessings on all of you, Judith
Posts: 228 | From Mass. | Registered: Feb 2009
| IP: Logged |
bettyg
Unregistered
posted
judith,
yes, it must be taken in slowly!! it's overwhelming and still is for me and almost 5 yrs. now correctly diagnosed!
since i made your week; i'll start on next week's kisses!!
start a notebook or type in your word processor of things you want to remember and where it's located, etc. that will help you as you plan your strategies ok! smiling since i used up my max of 8 icons!!
IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Judith and Richard,
I will pray for you and your daughter...that you will all find the strength you need to fight the fight.
You sound like a very loving family which is an example for everyone.
Someday you will be posting her story in success stories too.
Come here often. It's such a great group of people.
Keep reading as much as you can and take lots of notes when she goes for her LLMD appts.
It also helps to read inspriring stories in general to keep your spirit uplifted.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
I am a patient and also caregiver to my 3 children.
The day I realized that I may have given this to all 3, and that it took me so long to see that my oldest was sick was the most painful day I ever had.
My oldest went a very long time (her entire childhood) w/out the right dx. She was labeled ADD, some teachers felt she was a "dreamer" and "lazy". She is none of these. Like your daughter she was functioning, it still hurts to think that she was suffering so long without me realizing it.
Today, she is in college. Biology major, with A's in all of her science classes. She has come a long way.
Your daughter may have a long road, but with you beside her she will get through this. She will get the life back that she deserves. Thre is HOPE.
I don't know if anyone else here addressed this, I could not read all of the posts so I may be repeating something here. You mentioned that she started the abx and now she is worse. Do you know what a herxheimer reaction is? Most/many of us patients do get worse before making improvement...it is a sign that you are on the right track and that the abx are killing the spirochetes....good news!
My heart goes out to you and your family. I understand the grief you are feeling, as a parent we wnat to protect our children. You have not failed...this is not your fault.
Your daughter is very lucky to have such a loving family...best wishes to all of you.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
| IP: Logged |
posted
Richard, I'm going to make mine very simple and short:
IT WORKS.
Just started my own doxy treatment in Feburary,
went thru (still am to an extent) some AWFUL days and nights
BUT now I actually have some periods of improvement and it WILL get better!
-------------------- The Bite: July 1995 Next 13 years: Treated for things I didn't have Symptom total: 45 1 faint Lyme IgM May 2000 5 More negative tests IGeneX says YES! 3/16/09 Finally feel human: 2012 Posts: 120 | From Plainsboro NJ | Registered: Feb 2007
| IP: Logged |
Our 14 year old daughter is very acutely ill - bedridden, etc.
We are counseling with a LL therapist over the phone and one thing she said has been so helpful.
She told us that everytime we walk into her room to remind ourselves that she has a "brain infection" and is suffering from a sort of dementia.
It is so much easier to deal with her depression, rage, hopelessness, etc. when I do this.
We have had a long, hard road, and we still have much longer to go. There will be ups and downs, but she will get better. Pace yourself and try, try, try not to get burnt out.
You are giving your daughter the best gift imaginable, hope and care.
XOXO
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
| IP: Logged |
bettyg
Unregistered
posted
4 seasons, what a great true story you wrote above; it touched my heart very much.
my brother's wife died at 40 of EARLY onset alzheimer's disease and your story brought back many memories, etc. of our going thru that with her.
posted
judith, as a 24 year old female who also had to move back home and out of my apartment with my friends after i just couldn't live alone anymore.. i want to give you some hope... i have lyme, babesia, and bartonella..
I am not where I want to be but I have gotten better.. It's been a little over 7 months of treatment.. and I've recently seen big improvements.. I know that eventually I'll get there...and your daughter will too!
Posts: 245 | From East Brunswick, NJ | Registered: Oct 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[Wink]](wink.gif)
come on to the board...express your feelings.....many times this board helped me through some dark days....![[group hug]](graemlins/grouphug.gif)
mtree![[Smile]](smile.gif)
![[cussing]](graemlins/cussing.gif)
![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic